Fent withdrawal and restless legs

Shaping up to be a BAD night! God help me! Legs will not stop!!! 2mg Requip not working!!!! Only slept 1 hour in last 36

Hi Melissa, sorry you are in a bad place just now, you are at your worst. Can you get something from your Dr to help the legs ? Also low dose Amitriptilline 10-20mg  helps with pain and sleep if taken at night. It is not an unreasonable request given your situation. Have you managed to get compression stockings to see if they help. You can get them at the pharmacy for Airflights and I think would cost about $12.

If you can't sleep and feel bad at night, try a bath/shower followed by lying on the sofa watching some tv/movies. I found that sent me to sleep for about an hour at a time. Then I would go to bed and try to sleep. Also try some herbal night solutions I tried nytol and it seemed to help, you should get something herbal at the pharmacy too if your are like UK ones. I do hope you have a better day and night today. I found I was worse day 3-5 then things got quite a bit better with good and bad days.I got severe cramps in legs rather than RLS and bad peripheral neurophathy in feet. Try to exercise today by walking to get your own seratonin working. Keep a diary.

Lots of hugs and tie those legs down tonight. xxx

Actiq -

I do have medicine for my legs but it's not working the doctor gave me Repinerole (Requip) but it's not working so he's even doubled the dosage just yesterday but it is is not working or not working yet anyway. I would not be able to wear compression stockings there's just no way. My skin is so sensitive I would be feeling like I was really really tied down and I couldn't do it. I am getting frequent showers at night time sometimes a ease up a little bit I'm unfortunately not long enough for me to get back to sleep.

I'll get through this. It's just bad right now.

M

Actiq -

I slept about 3 hours early this morning which after being up between 72-80 hours on about 2 hours sleep, I was thankful for. Still have serious leg issues and arm issues and a ton of pain. I think I've discovered something though that it's like my nerves in my whole body are trying to come alive again and I'm wondering if the Fent hasn't suppressed the central nervous system so much of the last decade or so that they are just now coming alive after being off for almost almost a week. I experience neuropathy and occasional itching. I'm having a hard time with clothes or anything else touching me. My skin is hyper sensitive. The pain is unbearable at times. My stomach has calmed down a little bit and I'm starting to get hungry. My wife has had me drinking stuff with vitamins and minerals in it and I'm taking melatonin at night. I've taken your advice and been walking.

I want to apologize - it sounded the other day like I was blowing off all your advise and I didn't mean it that way. My dr did increase the RLS drug but not doing much. The RLS is still a MAJOR problem. I was thinking initially that the jerking and constant moving was causing ALL the pain, not only in my joints but I've developed burning sensations. However, my wife said today she wondered if the nerve endings are coming back alive after being suppressed for so long. Do you think that's possible? We know opioids is a central nervous system suppressor.

So I'm on RLS meds, taking frequent showers, doing everything except the stockings. I have a hard enough time just dealing with a loose sheet on top of me, I know I couldn't handle that.

Thanks,

Melissa

Hi melissa, I am so glad you managed to get some sleep at last. Yes, your wife is absolutely correct, the Fentanyl has blocked off all these receptors for so long and now they have nothing so everything is hyper aware, pain, how your skin feels, the burning. All the nerve ends are empty with nothing to fill them and it causes all sorts of problems and pain. Please be aware this hyperalagesic phase will pass. It's also your brain messing you about wanting the Fentanyl. I am just sorry the meds are not working for the restless leg syndrome as it must be driving you to distraction. No, I didn't take offence, nothing worse than just having been to the Docs and someone suggesting you go again.

Congratulations on being a week free of Fentanyl It took me till day 6-7 before I wanted to eat/drink and it sounds like you have a very caring partner looking after you doing all the right things. For me the worst thing was the sweats/chills, for you it's the RLS. We are all different.

Congratulations again on now being one week Fentanyl Free. You have come a long way since last Sunday. Be proud of your achievements.

Sending great big virtuals hugs xx

Actiq -

By far the hardest thing I've ever done. Every.single.time I lay down, legs and arms get restless. Thank you for your help. We had a hunch that the nerve endings were just freaking out. I slept about an hour this morning. Better than nothing. But how long can I keep going with no real rest? Sometimes I feel like I don't have the energy to fight. But I know I have to keep going and thanks to people like you Actiq you're helping to make that possible.

It took 5 weeks after stopping to feel better for JENNIFER? Scary thought to me right now.

Hugs!

M

It's SO good to hear from you! I've wondered how you've been doing. I'm so glad you're totally off and doing well. It gives me hope. I have been thinking of just not putting on another patch, in fact, it's due today. Being already in hell, it seems logical but I'm soooo scared Actiq. I need to make the decision today. I do have good news - I was able to sleep for about 7 hours last night. It makes me feel like I'm ready to continue the fight. Earlier last night and yesterday I was ready to throw in the towel. My MAIN problem is restless legs and it also affects my arms. My Mom suffers from this and after watching her I've developed almost a phobia. And now, here I am. I've always said (in jest) - "if I ever get RLS just give me a gun." Again, here I am. And what it's doing is making my Lupus joint pain really really bad. I have 9 Lortabs to last me the rest of my life and I'm trying not to use them - BUT - the last few days I couldn't stand the pain!!!!! SEVERE joint pain and jerking! Like I said, I can deal with vomiting, diahhrea, no sleep, anxiety and the rest, but not RLS. I do have Requip my dr gave me but it's not working. I've increased the dose slowly but still not working. How much worse can this get Actiq? Be honest with me. I need to make a decision today....

BIG HUGS!!!!

Melissa

HEY 7 HOURS SLEEP IS WONDERFULL, I haven't had that in 4 years. Well done. You get hyperanalgesia initially and the pain will settle. Don't be fulled by your brain that this pain level will stay or all the aches you feel will remain. It's your brain wanting more Fentanyl. Yes we are all DEPENDENT, not addicted, and it's the brain being dependent on Fentanyl filling the feel good receptors in our brain, but they will be empty till you start to ptoduce your own again. I can honestly say my pain is only a little worse without the Fentanyl and bearable, so the Fentanyl was not wonderfull, it just made me feel good and made me feel I had energy. You shouldn't get much worse. Make you decision today to stop.

I was at the stage you were at which was why I cold turkeyed from the oral fentanyl 4x day then did the super quick patch taper. Keep the last patch on for a week (Someone here advised that so I did or till it falls off) or keep your current patch on. Surprisingly apart from the gross diarrheoa, sweats and not sleeping it didn't get any worse. Honestly. Stay at home the first 3 days in bed on the sofa with blankets, watch comedy movies, again advice on here which I took. It's comedy to make you laugh, to raise your setonin level and fill these feel good brain receptors. After day 3 it gets better. So it's either put up with your current state for a lot longer or just jump now and what you are  suffering will end sooner. It's the fear of the unknown that holds us back. The fear of will we cope? With hindsight I would have jumped a lot sooner to get it over and done with. For me the final jump was not the worst, it was cold turkeying the oral Fentanyl/Actiq. The only other thing that happens and will probably surprise you is in the 2nd/3rd week I had 2 bouts of weeping. Real crying for a few hours, what was I crying for I do not know. I was just so sad then like the switch that turned it on turned it off just as quickly. I had been warned about this by a drug councillor and it did surprise me.

Do I feel like its only 3 months ? No, it seems much longer, so no I don't miss it and I have had the opportunity to have it again. Do I want it again? No.

Try to have someone with you. I was on my own as my partner had died the previous year. It's much better to have someone look after you and give you a cuddle when you need it.

Wishing you well whatever your decision is. Only you can make that decision and keep in touch daily to let us all know how you are doing. What you are doing will inspire others too and help them too.

I would go back to your Dr to get something for the RLS and something like diazepam to help with the final jump off Fentanyl. This is not an unreasonable request for 12 tablets to use as required not for regular use. I went to my Dr with a long list of what I wanted and the only thing I didn't get was Clonidine. Do not appologise for requesting drugs. It's the Drs who put us in this situation.

Remember its like saying good bye to an old friend. Fentanyl has been part of your life for a long time, you'll miss it to start with, but as your life improves it will dissapear into the background and suddenly one day you'll realise its out of your life for good.

An enormous virtual hug and warm wishes xx

Yes, I'm not planning to put on another one. If I'm going to be this sick I might as well go for it. Another thing that's happening is I've developed a bunch of sores on my chest, stomach and one on my arm. And they're leaving scars. My wife and I are thinking that it's just another way the toxins are coming out. I also sneeze a lot. But have you heard of the sores? They start as pimples but stay red til they dry out and scar.

Hi Melissa, Well Done. Stck with it> I never heard of sores, but my hair has thinned dreadfully, one other person on this site also had hair falling out . Yes I got sneezing, but mainly if I ran short of oral Fentanyl. It was strange sneezing where I would sneeze about 7 times in a row uncontrollably then it would stop. Are the sores where the patches were?

Hello Actiquser AND Melissa,

Just though I would add, I had sneezing in a BIG way. Like, 5, 6 or 7 or more at a time, and they were 'dry' and stinging. Sometimes the sneezing woul actually wake me up (if I got, like, 30 min sleep that is...) this is very normal and will pass.

I didn't get the sores, but, like Actiquser I did notice a thinning of my hair (and I don't think it's just that I was reaching 40 yrs LOL).

Lastly, as mentioned already, I had slightly different symptoms if I was running low on patches, rather than completely without. Of course, if I was completely without, they were worse, but also just different. Weird... we are all different and unique human beings!

Melissa you are BRAVE and will do this. Keep going. Keep posting. And GOOD LUCK.

You have awesome support on these forums.

Mark.

Hello Actiquser AND Melissa,

Just though I would add, I had sneezing in a BIG way. Like, 5, 6 or 7 at a time, and they were 'dry' and stinging. Sometimes the sneezing woul actually wake me up (if I got, like, 30 min sleep that is...) this is very normal and will pass.

I didn't get the sores, but, like Actiquser I did notice a thinning of my hair (and I don't think it's just that I was reaching 40 yrs LOL).

Lastly, as mentioned already, I had slightly different symptoms if I was running low on patches, rather than completely without. Of course, if I was completely without, they were worse, but also just different. Weird... we are all different and unique human beings!

Melissa you are BRAVE and will do this. Keep going. Keep posting. And GOOD LUCK.

You have awesome support on these forums.

Mark.

Melissa,

I was just looking at the issue you mentioned about sores. Apparently some people have had rashes and similar in fent withdrawal. I think what you and your wife said about toxins may be spot one.

One thing: make sure these are not the start of"pressure sores" where perhaps you have been lying or sitting still, as they are nasty. But these only usually happen at the point of contact between skin and say, bed or couch (elbows, thighs buttock area etc.) hope you don't mind me being blunt, but as I said before, sugar-coating, and mincing words, and I don not get on!

Best wishes again.

Thank you! No, it's nothing like bed sores. I can't stay still long enough because of restless legs and arms 24/7. It's that bad. BUT today is better with that symptom. I'm just pukey today and a little restless legs. Plus, the sores are all over my upper chest, shoulders, flanks and stomach. They aren't real big. But I'm thinking again it's just toxins screaming to get out.

Actiq & Mark -

Don't know what I would do without you guys! Actiq started this journey with me in July so we've been at it a while...but now that I'm down to the wire you all are my rocks! Thank you so much. Also a girl started a new thread RE depression. Let's keep her positive. Today for me is good! Not too many problems except I'm probably the only one in the U.S. who lost weight over the holiday!

Glad today has not been too bad. Pity about the constant RLS. Remember to have plenty of showers/ baths if you have the sweats/ cold.

As for the weight loss I got that couldn't eat / drink for about 5 days and became very dehydrated (headaches) SO REMEMBER TO KEEP THE FLUIDS UP. I forgot to say after this don't be surprised if later you get a sweet craving. It's apparently common to all opiate withdrawals. I stuffed myself with toffee popcorn. My drug councillor laughed when I told her I had a suger craving.

I've responded to hayleyclaire.

Keep your chin up you are doing SO SO WELL. You should keep a diary to remind yourself of how far you have come.

There is a book -  Painkiller Addict: From wreckage to redemption - my true story by Cathryn Kemp. (UK BOOK available on Amazon)This is about someone addicted to Actiq ( fentanyl Lollipops ) what I had. I read this thinking I would relate to this. NO WAY -- so I was not an addict. It's worth reading from that perspective. Another person from this site had also read it and his opinion was exactly the same as mine. It will enlighten you to the big difference between DEPENDENCE and ADDICTION.

Continuing virtual hugs and keep us updated daily so we can support you. xx

Maybe that's it - I've had a headache all day. Advil didn't help...

Actiquser - I believe that was me (maybe others as well?) who read the Kathrine kemp book and posted. I am in the U.K. btw., and yes, I could not relate to it much at all either.

Some bits I even called into questions but I won't go there, I don't want to get sued or something!!

But yes, an excellent insight into the difference between addiction and dependence. 

Hello Pointer99 lovely to hear from you and yes it was you. How are you doing? I have spoken to some prominent individuals in the NHS and Charities mainly in London (although I am in Scotland) to highlight the issues surrounding the prescribing of Fentanyl and then it's withdrawal without adequate support. Surprisingly I got a positive response and I feel what I highlighted has been taken on board. It is to raise awareness of the issue with top specialists in their fields.

melissa I hope today is better. For headaches try dissolving paracetamol or paediatric paracetamol suspension. It is absorbed much quicker and easier. That's what I used and found it helped.

Headaches are from the loss of fluid through diarrhoea,vomiting and lack of adequate intake. I hope the sores are improving. Every day is a step nearer getting your life back, you are doing so so well and Christmas will be enjoyable rather than miserable since you took this big step early,

Lots of virtual hugs xx

Bad bad night. Still have a headache but will try the paracetamol. I'll write more later hopefully...

Hello Actiquser, first up, likewise, it's good to hear from you! I never realised you are in uk (Scotland), but I DID think you were referring to me about the book...

Truth be told, these more chronic fent withdrawals are a really hard thing, I still have little sleep, "using dreams" (is that just me?) and so on. But, as they say, slowly slowly.....

I'm so glad you are having some success with addressing this within the NHS. If you think I can contribute anything I have nothing to lose by trying... I do hope you are getting by, better, too.

Melissa, as Actiquser mentioned, you must stay hydrated. Loss of fluid thru sweats, vomit, bad stomach etc is a bad thing, and can cause all sorts of problems, from splitting headaches, to worse...

I said it before, but I found sweet, fizzy drinks like Coca Cola or similar were best, as the the sugar settles you a bit and the fizzy drink helped me with nausea. Keep going, sounds like you're getting somewhere. You WILL have good and bad days, that's life. Don't let your guard down! You CAN do THIS!!!

Keep posting, please, we are all here for a reason, we have all been thru this to some degree... just keep going!!!

Best wishes,

Mark 

Mark,

I think maybe you're right - I'll try root beer. I'm so afraid caffeine will make the restless legs worse. REALLY bad tonite plus headache x I lost track of how many days but there's nothing left in my stomach either....

Thank you for being there and advise

Melissa

Melissa,  it took me about two months to get where I could sleep 7 to 8 hours but still broken because of nerve damage to my bladder.  I had a very heavy fatigue feeling that I remember thinking it would never get better, but it does.  Out six months now and still have a few days of fatigue but I used that drug for 15 years so I think things will continue to improve.  You have done marvelous even with the side effects to come off this med.  lots of people never get off.  Down to 25 but not clear.  I take a good dose of Vitamin B daily and that seems to help with the fatigue and my memory.  Drug do kill brain cells over long usage.  I am 60 this year so that changes the way I feel compared to age 44 before my injury.  Life is good though and I thank everyone for their support.  Exercise will help a lot.  Even if you only go for a two minute walk today and add a minute each day.  At the end of a month you will be getting a good 30 minute workout!  May you continue to improve Melissa and well done!  Susan

I've been completely off for one week now and I keep plugging but it's very very difficult. Unable to sleep, it's really hard to find the energy but I cannot lay down!

Thank you for words of encouragement - I love this group.

Melissa

Sending love your way!  Try saying to yourself I can lay still and rest,  Jesus paid for my healing and I am claiming it.  Repeat it often during the day and night.  Faith and positive thinking goes along way when someone with your courage puts it to use.i started claiming my healing from my back pain in the spring.  It took months but it is here.  You can do it!

 Susan

Check the can as not all root beer or orange soda is caffeine free. Found out the hard way when up all night. I use crackers to swallow any pain meds and that works for me.

My sleep is bad as well. I do take sleep aids and some stretching and meditation in the evening. I notice the more I sit during the day the more RLS and do not get a massage. Gently rub your legs before you go to bed and no heavy blankets. The energy will come slowly but it comes. Keep focused on your goal. I know there are days when it seems hopeless but then things change.

Wish I was somewhere warm. In Delaware and it's getting cold and making me cranky. I'm here for you anytime. Just reach out

Reading some back posts and I realized I have the same weird sores. Mine are like tiny chicken pox but don't itch and fill with clear fluid. They seems to come and go. Mostly on my back. Thought it might be weird hives or toxins in body

Careful of baths with RLS as that sets me up for a very bad night. I love baths and have a huge bubble jet I can't even use now. Ugh

Omgosh - you just described my sores!!! Exactly the same thing. But mine are leaving scars.

Yes, I'll check the root beer. I'm not a soda drinker but right now maybe one every day or two. Sticking to Gatorade.

There is reduced sugar ginger ale which is not diet. So weird we had the same sores. I didn't give it a lot of thought but they came back today and I read your post. I use peroxide on those I can reach. I thought about trying toothpaste lol. People use them on pimples so hey it's worth a try if it avoids scars.

Guess I need to do a search on this issue and see if we are an anomaly ha ha. Interesting to say the least

There is a Chlorox Hexaderm you can get at the pharmacy. It's new stuff. I've been using it in the shower. If you can't find that, pretty much all pharmacies carry called Hibicleanse. It doesn't neccesarily solve the problem but helps with the bacteria.

Hey Actiq -

I know it's a busy time right now for everyone but I needed to stop and take a minute to communicate with my lifeline (you). Here's the update.

I'm on day 34 with no patch! I feel so much more awake, I'm more active and I'm more alive! God so help

me I'll never go on Fent again. My stomach has straightened out with a few exceptions. Every now and then I have trouble (today) but at least it's NOT constant! The legs are still a problem. The nerves are still coming alive. I'm having increased pain especially in the evenings in my legs and fire in the bottoms of my feet (no longer in my lower legs. Thank God that has passed). What's happening is because I'm so much more active, by evening the pain in my legs/feet is pretty bad. I'm in a catch 22, there are still most days that I have RLS during the day, preventing me from being able to lay down and rest so I'm moving all the time and by 4 or 5 in the afternoon I'm in a lot of pain, not to mention joint pain from Lupus.

But at night I'm still fighting constantly with RLS so I don't get much of a break. I am sleeping better getting 2-3 hours a night. But the only way to get that few hours is to take 2 hydrocodone at once, and I don't have many left and not much hope of getting more although I am trying to get an appointment with a pain management doctor. Obviously the

Requip isn't working. I spent 2 nights at the sleep lab, the first one they sent me home early unable to complete the test because my legs wouldn't stop and I never went to sleep. They had me back last week another night and they said I got almost 2 hours of REM sleep and once I went into REM my legs stopped. Anyway, my follow up with the Neurologist that is helping me is JAN 9th. The sleep lab people said obviously the Requip isn't working so it needs to be changed. So basically my news is mixed. The thing I'm happiest about is feeling ALIVE for the first time in a VERY long time. I'm still hoping the new type of pain - neuropathy in soles of feet and forearms and fingers that started with this last push of 25mcg will subside. It already has in my lower legs like I said. I'm still sneezing a LOT. I still have sores developing. In fact, I called to make appt with dermatology but my dr is no longer in business. I'm interviewing a new primary care physician on Tuesday so we'll see what comes of that. And hopefully now that I'm off the patch I can get an appt with pain management (let me remind you - he refused to see me when he found out I was on Fent), so I'll keep you posted about that.

I know I've written a book here, and I'm sorry to bother you during this family holiday time but I needed to touch base. I guess I'm looking to hear that I'm not going to be stuck like this forever LOL! I'm still sleeping in the guest room so I don't disrupt my wife's sleep and she appreciates it. I hope this finds you well and your pain controlled as much as it can be, my friend. That goes for everyone reading this as they're getting off this dreadful medicine.

BIG HUGS XOXO

Melissa